This review is from: Beyond My Control: Why the Health and Social Care System Need Not Have Failed My Mother

Beyond my control grips you by the heart strings and pulls you through a true story of frustration, anger, sadness and frequent utter despair. The book illuminates the dark corners of the overstretched, and at times entirely negligent, NHS and care services that is horrifying to witness. It follows the authors struggle to fight for her mother’s right for basic levels of care against what feels like a ruthlessly inhuman system that gripped her mother and processed her all the way to the end of life “Liverpool Care Plan”.

The book not only functions as a captivating modern story of a tragic struggle against ‘the system’ but serves to highlight the dangers threatening anyone in the receipt of care. The book introduces the authors mother from the outset, without relying on an unnecessary back story to the authors relationship with her to artificially pump the emotional impact of the book. The gravitas is in the eloquent and accurate recounting of the events leading to the mother’s death, allowing the genuine horror of the situation to serve as an honest vessel through which the message of the book is conveyed.

There are numerous moments in the book where your jaw will drop in shock at the 21st century care sector. If you think that we live in a transparent world where every action is taken to meet the basic standards that we expect for our loved ones in receipt of care, you are wrong. During your read, you will witness lying, negligence and carelessness at every level in the care and health services.

It is impossible not to feel great empathy with the authors frustration and sadness as she tries everything she can to improve the care for her mother. The feeling of hopelessness as the author repeatedly tries to rectify substandard care is suffocating at times as she is brushed off, ignored or just told her concerns will be ‘looked into’. The sense of the needless loss of life is incredible. The mother was admitted into hospital for a broken leg (as the result of negligent care), and through further hospital negligence and staff failing to follow the care plan, a pressure sore develops. We are left with a bitter taste in our mouths when the mother finally passes away in agony.

If you are a carer, in the receipt of care, or know anyone going through a similar situation, this book is highly recommended. The author does a great job of not only sharing her story, but giving you the tools and knowledge you need to best protect yourself and loved ones from negligence, which is summarised in convenient ‘what you need to know’ sections at the end of various chapters. While it is harrowing, it will certainly show you how important good quality care is and give any carer that works to good standards a sense of pride. In all, the greatest thing one can take away from this book is a warning against the apathy that exists throughout society when it comes to care standards. The author vocally rebels against this attitude from the outset reminding us that “accidents do not happen.”

As a society we do not discuss death and dying openly. Today I delivered training on Person Centred Support and part of this included supporting individuals to plan for their future well-being and the importance of supporting an individual to plan for their end of life care where appropriate.

Here is an extract:

Being person-centred [1]

The national End of Life Care Strategy for England defines, a good death‟

as:

o being treated as an individual, with dignity and respect

o being without pain and other symptoms

o being in familiar surroundings

o being in the company of close family and/or friends.

We plan our life, why not plan our death?

We want a good death. We want …

Advance care planning[2] drawn up, which specifies my wishes as the end of my life approaches

Information about the dying process and the services available

To choose where to die, hospice, hospital or home [help is immediate in hospice and hospital]

Family and friends around us

Music of our choice playing in the background

Scented candles burning

Staff that have been trained so they can talk to us about our wishes and choices at the end of life

Competent staff, who treat us with dignity and respect [even if we appear to be unconscious]

Staff who speak to us and not down to us

To ensure that equipment such as syringe drivers and palliative care kits are available [if required]

A personal alarm if any of us become frail

Technology so we can Skype my doctor, nurse etc. if we have any worries.

Decisions about my funeral:

Buried or cremated? Where do we want to be buried or cremated? If cremated where do we want my ashes scattered?

Do we want flowers, readings, music at our funerals?

What clothes do we want be dressed in. What jewellery and/or make up do we want to wear?

Decisions for after funeral:

A wake, or a celebration? People to be happy not sad.

After the funeral, drink, food, a celebration, memorial?

How we would like to be remembered, a plaque on a bench, a rose tree, a trust set up in my name?

Making a Will:

Some felt that if their late relatives had made a Will this would have made things a lot easier at the time of losing a loved one. Without the Will there had been difficulties on knowing what possessions the late relative wanted to give to whom.

“Good afternoon Suzan, i have just finished reading your book Beyond my control, well firstly i think that you are very brave to have wrote the book like that knowing how upsetting it must have been for you and your family and what you went through, and secondly how it has inspired you to start improving the social care system with the help of all people involved in the profession and also what families and friends can possibly do, and what signs to look out for. There is a thousand more things i can say and i will say them on a few book reviews, but for now congratulations and well done on such a thought provoking and often very sad book. RIP to your dear Mum and Aunty and thoughts go out to your family also. xx”